Wednesday, October 31, 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and of love. These are from the month of October.

We've also been awarded another honour. Down Wit Dat has beenincluded inPhD in Special Education's Top 100 Special Needs Resources on the Web. Thank you very much!

October is finally over; thanks to everyone that supported me through this year's31 for 21 Blogging Challenge. It was a busy month; not only did I blog every single day, but I managed to work full time, work 25 hours of overtime, help keep three boisterous kids fed and dressed and still managed to avoid the cold that everyone seems to have. A special thanks to my husband, who put up with proofreading and my self-imposed deadline crabbiness.

On a more personal note, today is our 15th wedding anniversary (yes, on Hallowe'en). Happy Anniversary honey! I love you.

This month, our Medical Monday posts were featured on Downs Side Up. Thanks Hayley!

We had our eighth T-21 Blog Hop on October 21. Join us for three days of excellent blogging on November 21!

Tuesday, October 30, 2012

With the popularity of eugenic theories, the segregation and institutionalization of the differently abled and general public vilification, a fertile ground had been prepared for what came next.

A Call for Euthanasia

Many countries followed America's eugenics movement and imitated it's legislation. In countries such as France, Belgium, Sweden, England and Germany, eugenic principles were introduced into everyday life. Many US states had passed sterilization laws, Indiana being the first in 1907.

The 1912 International Eugenics Congress featured a paper called "Preliminary Report of the Committee of the Eugenic Section of the
American Breeders' Association to Study and to Report on the Best
Practical Means for Cutting Off the Defective Germ-Plasm in the Human
Population", in which ten solutions were put forth to deal with the "socially unfit". They were, in order: Life segregation (or segregation during the reproductive period), Sterilization, Restrictive Marriage laws and customs, Eugenic Education of the public and of prospective marriage mates, Systems of matings purporting to remove defective traits, General environmental betterment, Polygamy, Euthanasia, Neo-Malthusian doctrine, artificial interference to prevent conception and Laissez-faire. An 1918 Eugenics Textbook "Applied Eugenics" by Paul Popenoe and Roswell H. Johnson, listed many suggestions as well, among which:

"... the first method which presents itself is execution. This has been used since the beginning of the race, very probably, although rarely with a distinct understanding of its eugenic effect; and its value in keeping up the standard of the race should not be underestimated."

American eugenicists felt that American society was not ready yet to implement organized euthanasia, however many institutions and physicians within employed their own methods. Passive methods included allowing infants to starve to death (such as famed MD and wanna-be-movie star Harry J Haiselden) and withholding treatment. One large institution in Illinois however, fed it's patients tuberculosis infected milk believing that the genetically superior inmates would have immunity. That particular institution, not surprisingly, had a 30 to 40 percent death rate per year. Sterilization remained the most popular method; in the first year of California's sterilization legislation for example, 9,782 people were sterilized. Most of these were women.

Charles Davenport, author of Eugenics, The Science of Human Improvement by Better Breeding and one of the creators of the Eugenics Record Office (with funding from the estate of railroad baron E. H. Harriman)
was particularly close with his German colleagues; even after America
was in the grips of the Great Depression, American charities such as the
Carnegie Institute and Rockefeller Foundation continued to fund
German eugenics research. However, the eugenics world continued to watch closely the American "accomplishments" of "biological courts", involuntary sterilization, segregation, detention, propaganda, perpetuating of pseudo-science and the ongoing discussion of euthanasia.
In 1924, an imprisoned corporal of the German Army began to study eugenic writings, including those of Davenport, Popenoe, Leon Witney and Madison Grant, who blamed the corruption of the Nordic ideal on Jews, Slavs, Afro-Americans and many others who were not blonde or blue eyed. In his book The Passing of the Great Race or The Racial Bias of European History, Grant wrote:

"Mistaken regard for what are believed to be divine laws and a sentimental belief in the sanctity of human life, tend to prevent both the elimination of defective infants and the sterilization of such adults as are themselves of no value to the community. The laws of nature require the obliteration of the unfit, and human life is valuable only when it is of use to the community or race."

The young corporal, Adolf Hitler, went on to write fan mail to both Whitney and Grant. Hitler's letter to Grant thanked him for his book and referred to it as "my bible". In his own book, Mein Kampf, published shortly thereafter, Hitler echoed his eugenics heroes with the following call for euthanasia:

"The demand that defective people be prevented from propagating equally defective offspring is a demand of the clearest reason and if systematically executed represents the most humane act of mankind. It will spare millions of unfortunates undeserved sufferings, and consequently will lead to a rising improvement of health as a whole."

He also references the United States frequently, including his his admiration of restricting immigration. His keen interest in American eugenics legislation is reflected in this comment to a comrade;

"...it is possible to a large extent to prevent unhealthy and severely handicapped beings from coming into the world. I have studied with interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock."

Adolf Hitler came to power on January 30, 1933. For the first 10 years of the 12 year Reich, eugenicists welcomed his proposed fulfillment of their tenets of identification, segregation, sterilization, eugenic courts and euthanasia. In July of 1933, Germany passed the "Law for the Prevention of Heriditarily Diseased Offspring". This law provided legal grounds for the sterilization of people deemed by a court hearing to be "unfit". This law provided that any person with a hereditary disease could be sterilized if there was a high probability of it being passed on to future generations. Those listed included "Congenital Mental Deficiency" (such as Down syndrome), schizophrenia, bipolar disorder, epilepsy, Huntington's chorea, blindness, deafness, any severe deformity and those with severe alcoholism. In the general public, the notion of the "useless eater" was perpetuated.

In 1934, the superintendent of Virgina's Western State Hospital complained in the local paper "The Germans are beating us at their own game". For years, Nazi doctors would continue to routinely consult with eugenicists across America.

Extermination and Aktion T4

The first incidence of state performed euthanasia in Germany was known as the "Child K" case. Hitler was approached by the parents of a "deformed" child and asked his permission to allow the child to be put to death. After consulting with his personal physician and chancellor, Hitler granted the child's doctor the ability to euthanize the child.

This poster proclaims “Sterilization is liberation, nota punishment.” and asks “Who would want to beresponsible for this?” and features three children
with disabilities. Photo courtesy of Calvin College

By August 18th 1939, Hitler had created the Reich Committee for the Scientific Registering of Serious Hereditary and Congenital Illnesses (Reichsausschuss zur wissenschaftlichen Erfassung erb- und anlagebedingter schwerer Leiden) which required mandatory registration of all births of developmentally delayed and handicapped children by doctors and midwives. Children up to three years of age had to be reported to the offices of the Reich Health Ministry. Code named Aktion T4, Hitler ordered the "mercy killing" of all deemed "life unworthy of life"; this plan focused initially on newborns and young children. The program was managed by Hitler's personal physician, Karl Brandt and the chief of Hitler's private chancellery, Philipp Bouler (the same two whose counsel he sought with Child K). To be included in this program were those with "idiocy and mongolism" (Down syndrome), those with blindness and deafness, microcephaly, hydrocephalus, absence of limbs, mid line defects of the head and spine and paralysis (such as cerebral palsy). The decision to end a child's life was based on the results of a questionnaire. No medical examination took place or records were consulted. Three "medical experts" placed a red + or a blue - on a form marked "treatment". A minus sign represented a decision by an "expert" to not kill the child. Three plus signs meant the issue of a euthanasia warrant and transfer to a "Children's Specialty Department". A unanimous decision was required; in the event of a split decision, the child was "observed" for a period of time and another attempt would be made to achieve a consensus.

"Life unworthy of life"

These children were sent to one of six facilities where they were killed by drugs or by starvation. It is belived that 8,000 children were to lose their lives this way. In October of the same year, this decree was extended to include older children and adults. Hitler backdated his declaration to September first and increased the power of

"the authority
of certain physicians to be designated by name in such manner that persons
who, according to human judgment, are incurable can, upon a most careful
diagnosis of their condition of sickness, be accorded a mercy death."

This would not only dispose of the "useless eaters" but also free up beds in hospitals for wounded Nazi soldiers. Questionnaires were sent to institutions for the mentally ill, chronically ill and hospitals. Patients were required to be reported if they had schizophrenia, epilepsy, dementia, paralysis, syphillis, developmental delays, encephalitis, neurological conditions, had been in hospital or institutionalized for 5 years or more, was criminally insane, was a foreigner or was Jewish, African-American or Gypsy.

There were four main divisions that aided the program that were created in 1939. The first, the Reichsarbeitsgemeinschaft Heil- und Pflegeanstalten (RAG) was responsible for the distribution and return of the registration forms to the institutions. The completed forms were forwarded to the "experts" who decided the patients fate. The Gemeinnützige Krankentransport GmbH" (Gekrat) was charged with transporting the patients via Gekrat buses to the killing centres, while the Gemeinnützige Stiftung für Anstaltspflege" (Stiftung) created extermination sites by renting spaces, setting up the equipment, hiring staff and managing their budgets. Finally the Zentralverrechnungsstelle Heil- und Pflegeanstalten" (ZVST) served as the central clearing office. The main office was located in Berlin on Tiergartenstraße 4, which gave the program it's name of "T4". Physicians and medical assistants were eager to assist with this programme as the salaries were made very attractive.

Six main euthenasia sites were created across Germany and Austria. In January 1940, Brandenburg (near Berlin), Grafeneck (near Stuttgart) and Hartheim (near Linz, Austria) were established; both Brandenburg and Grafeneck ceased functioning (officially) between September and December of the same year. Sonnenstin/Pirna (near Dresden) opened in April of 1940 and Bernberg (near Magdeburg) was established in September. The last to open was Hadamar (near Koblenz) which opened in January the following year (and closed that August). Bernburg ceased operation in April 1943, while Sonnenstein/Pirna ended in August 1943. Hartheim was the last to cease it's operation, which it did officially in December of 1944. The Zwischenanstalten were intermediate stops between the patients institution of origin and the killing centres. They also managed the capacity of the centres and were tasked with 'cover up' for inquiring relatives. It was at Brandenburg, a converted prison, that the first Nazi gas exterminations took place. The T4 victims were gassed in chambers disguised as showers and their remains burned in giant ovens. Families were told that the victims had died of various illnesses including pneumonia or heart failure. They would each recieve an urn contianing mixed ashes. The routine deception and gassing/cremation would be used again, only on a much larger scale.

The billowing chimney at Hadamar. Ashes with
human hair would rain down upon the townspeople.
Courtesy of H. E. A. R. T.

Although it was a top secret operation, Aktion T4 became difficult to hide, especially with the dwindiling numbers of the mentally or physically disabled and mentally ill. Also, the thick, constant, maloderous plumes of smoke from the crematoriums was also difficult to conceal. It is rumoured that at Haldamar, a former hospital for the mentally ill, children would watch the incoming buses and taunt the inhabitants with "here are some more to be gassed". Ashes containing human hair would rain down on the town. Those aware of the goings-on at the six centers were either in favour of the program or completely silenced by fear.

The following three testimonials speak volumes about the killing centres (in this case, Hadamar):

“After doors were closed, the air was sucked out of the gas chamber through a ventilator by the same doctor who carried out the earlier `examination.’ Then for about ten minutes, carbon monoxide was let in [by that doctor] and its effect observed through a small window. As soon as he thought that those shut in had died, he had the gas chamber emptied. First fresh air was introduced through the ventilator, and the gas was forced out. From the beginning of the gassing until the reopening of the gas chamber took about one hour. The corpses that were to be dissected were removed to a special room. However, the great majority of corpses were immediately taken to the ovens and burned there.”

"Through it I saw 40-45 men who were pressed together in the next room and were now slowly dying. Some lay on the ground, others had slumped down, many had their mouths open as if they could not get any more air. The form of death was so painful that one cannot talk of a humane killing, especially since many of the dead men may have had moments of clarity. I watched the process for about 2-3 minutes and then left because I could no longer bear to look and felt sick.”

“Did I ever watch a gassing? Dear God, unfortunately, yes. And it was all due to my curiosity.... Downstairs on the left was a short pathway, and there I looked through the window.... In the chamber there were patients, naked people, some semi-collapsed, others with their mouths terribly wide open, their chests heaving. I saw that, I have never seen anything more gruesome. I turned away, went up the steps, upstairs was a toilet. I vomited everything I had eaten. This pursued me days on end.... Looking into the chamber, I could not imagine that this was completely without pain. Of course, I am a layman and this is just my opinion. A few were lying on the ground. The spines of all the naked people protruded. Some sat on the bench with their mouth wide open, their eyes wide open, and breathing with difficulty.”

A Catholic Bishop in Münster, named Clemens von Galen, delivered a sermon on August 3, 1941 which denounced Aktion T4 as murder. The Nazi party was publicly condemned and the faithful encouraged to withdraw from the party due to their "ungodly" policies. Hitler officially suspended the program 20 days later and in retaliation, beheaded three priests. At that point, over 70 000 lives had been ended. Although it had officially been stopped, it continued quietly in the background, especially in the hospitals of conqured territories and for those that remained in the institutions. Instead of gas, patients were poisoned or starved to death. Physicians were encouraged to err on the side of death when considering such an action.

The gas chambers used in the euthanasia centres were a testing ground; the Nazi party used the Aktion T4 experience to aid in the construction of the death camps in places such as Auschwitz and Treblinka. In fact, many SS officers that participated in the killing centres would go on to command in the camps. Although officially abandoned, Aktion T4 was still considered a "success" and became the opening chapter in what would become the Holocaust.

Meanwhile, in the Allied countries, increasing numbers of institutional workers were being drafted, leaving the already overcrowded conditions even more destitute. Although the horrors of the camps and Aktion T4 were exposed after the war, people continued to be sterilized against their will, long after eugenics was abandoned as a "science". In parts of Canada for example, this would continue well into the 1970's.

[Next time: Abandonment and Abuse]

Black, Edwin. War Against the Weak: Eugenics and America's Campaign to Create a Master Race. New York: Four Walls Eight Windows, 2003. Print.

"Disability History Exhibit." Disability History Panels. Alaska
Department of Health and Social Services, n.d. Web.
<http://www.hss.state.ak.us/gcdse/history/HTML_Content_Main.htm>.

Grant, Madison. The Passing of the Great Race or The Racial Bias of European History. New York: Charles Scribner's Sons, 1916. Print.

Hitler, Adolf. Mein Kampf. Germany: Eher Verlag, 1925. Print.

Lifton, Robert J. The Nazi Doctors: Medical Killing and the Psychology of Genocide. New York: Basic, 2000. The Holocaust History Project. Web.

Van Wagenen, Bleeker, "Preliminary Report of the Committee of the Eugenic Section of the American Breeders' Association to Study and to Report on the Best Practical Means for Cutting Off the Defective Germ-Plasm in the Human Population" (2009). College of Law Faculty Publications. Paper 74. <http://digitalarchive.gsu.edu/col_facpub/74>

One of the major areas affected by Down syndrome is the hippocampus, which is largely tasked with spacial skills and memory creation/consolidation. As there are three copies of chromosome 21 with Down syndrome (Trisomy 21), one theory is that it is an over expression of specific genes which causes some of the major cognitive difficulties.

If the specific genes themselves, cellular activity created by these genes or even a protein or compound secreted/lacking from the cells can be targeted, some of the cognitive problems with DS can be alleviated (or so the theory goes). Most of the study in this area however, could not be accomplished without a very special mouse.

Most of today's research involves a type of mouse that has been bred to have many of the characteristics of DS that occurs in humans. We share many genes with mice; the mouse chromosome 16 contains 80% of the genes of the human chromosome 21 (including most of what is known as the DSCR or Down syndrome Critical Region). Mice with a trisomy of chromosome 16 have been available for decades, however none survived very long. With the creation of new mouse models that do survive, there is an ideal analog that reproduces fast and readily. These mice share many features with human DS: developmental delay, cranio-facial changes, learning issues, hyperactivity, weight problems and some behaviour issues. However, it is not a perfect model as it does not cover all of the DSCR; new mouse models will need to be developed in time.

Having a model to help understand things like cognition has proved to be infinitely helpful and has opened many new avenues of research into Down syndrome, cognition and aging. Included are: the excitation/inhibition of certain neural pathways, restoring neuronal pathways, neurotransmitter restoration, sleep abnormalities and the discovery/reassignment of drugs for treatment (for more information regarding specific American projects, see this listing, courtesy of the Down Syndrome Research and Treatment Foundation. For a Canadian listing, see the Down Syndrome Research Foundation).

Down Syndrome and Alzheimer Disease

Alzheimer Disease is the most common form of dementia and has a very early onset in the Down syndrome community. As a result, these two areas of research are frequently joined; finding out what mechanism causes Alzheimers could lead for a treatment for both the general population and those with DS.

Dr. William Mobley is a Distinguished Professor and Chair of the Department of Neurosciences at UCSD and the Executive Director of UCSD's Down Syndrome Center for Research and Treatment. In this video, you can see Dr. Mobley discuss not only the mouse model that he uses in his research but also the link between Alzheimers and Down Syndrome and what these findings will mean for people with DS (from 6:26 on).

Every person with DS will develop Alzheimers; 40% of the general population develop dementia, most of which will also have this disease. This type of research not only affects people with Down syndrome, but also will benefit the larger population greatly as well.

One of the more enjoyable organizations has been the DSRTF's +15 Campaign. Not only do they offer up a voice for research, but they also raise funds for ongoing studies. With a goal of increasing the cognitive abilities of those with Down syndrome 15 percent (which could mean the difference between a person living on their own or not, for example), they have a variety of ways in which to stay abreast of current research trends. Interested parties can donate $15 (or more) directly to DS research or if you wish to "Adopt-a-Mouse", host an event or simply raise awareness, those options are available as well.

Understanding Down syndrome and increasing the cognitive abilities of those with it are very close to being a reality. With ongoing research and new discoveries being made all the time, successful treatments could shortly be within our grasp.

+15 <http://www.plus15.org/>

Down Syndrome Research Foundation <http://www.dsrf.org/>

Down Syndrome Research and Treatment Foundation <http://www.dsrtf.org/page.aspx?pid=291>

Heyn, Sietske. "The Down Syndrome Mouse - A Historical Perspective & What the Future May Hold." Stanford School of Medicine Down Syndrome Research Center. Stanford School of Medicine, n.d. Web. <http://med.stanford.edu/>.

Stanford School of Medicine, Down Syndrome Research Center <http://med.stanford.edu/>

UC San Diego School of Medicine, Department of Neurosciences <http://neurosciences.ucsd.edu/Pages/default.aspx>

Saturday, October 27, 2012

"When any prevailing prejudice is attacked, the wise will consider, and leave the narrow-minded to rail with thoughtless vehemence at innovation." - Mary Wollstonecraft

Today's post is about ugliness. It is about bullying, it is about persecution.

Today's post is about the R-word. I have spoken of this many times in this blog, on my page and in my group. It as offensive as any racial, ethnic, socioeconomic or sexual orientation slur.

However, there are a lot of people, that still don't get that.

Today's post is for those that still don't quite understand why. This is for people like the colleague that I had to correct the other day, who responded with "What's that?" and "what context did I use it in?" (after describing her day in our new unit as, well, you know). The answer is "no context is acceptable"; if the DSM has seen fit to remove it from all definitions, you can too.

If you still think after this post that it is just me and my little 'sensitivities', I thought I'd dispel any illusions by sharing some brilliant posts from other advocates.

The most poignant, quite possibly the most important one of all comes from self-advocate John Franklin "Frank" Stephens, a Special Olympics athlete who guest posted the following on the Special Olympics Website:

I will admit, there are some that will continue to rail against what were are trying to do here; most of those will never get it. There tends to be a lot of talk of "free speech" and rights and all sorts of things... the very things, in fact, that they continue to deny those with a learning disability. They are, quite probably a hopeless cause; I hope their children will manage to see through that. This isn't about a few people with an axe to grind, this is about human rights. This is about dignity and respect.

The R word is not acceptable any time, any place, any context. I will call you on it, I will stop watching your shows, buying your products. I will report you, I will take you to task for your irresponsibility and your cruelty, for you are well aware of the words that you use. "I didn't mean it that way" when you use a word that has been used to demean and degrade people, does not cut it.

Friday, October 26, 2012

For those not in the know, the DSM or Diagnostic and Statistical Manual of Mental Disorders contains the diagnostic criteria for all things psychiatric. The DSM also contains criteria for conditions that affect cognition. It has been revised many times over the years, but in 2013, the American Psychiatric Association will finally be putting out DSM-V.

The DSM has undergone many changes over the years and has re-written and discarded various nuances of humanity to reflect the times. It wasn't until 1973 that homosexuality was removed, for example.

The term "Mental Retardation" was used extensively in the DSM and listed a variety of diagnosing criteria. Included was a range, from mild to severe and the language very judgemental (this is taken right from DSM-IV-TR):

B. Concurrent deficits or impairments in present adaptive functioning (i.e., the person's effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least two of the following areas: communication, selfcare, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety.

C. The onset is before age 18 years.

Code based on degree of severity reflecting level of intellectual impairment:

As of May 2013, the term "Mental Retardation" will no longer be used; instead "Intellecutal Development Disorder" will be substituted. The rationale for this, is as follows:

"The term mental retardation was used in DSM-IV and in earlier DSM definitions. Mental Retardation is no longer used internationally or in U.S. federal legislation, so a name change is required in DSM-5. The term Intellectual Disability (ID) is widely used..."

Instead of the old definition, the following is what is proposed:

"Intellectual Developmental Disorder (IDD) is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. The following 3 criteria must be met:

A. Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience.

B. Impairment in adaptive functioning for the individual’s age and sociocultural background. Adaptive functioning refers to how well a person meets the standards of personal independence and social responsibility in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings. The limitations result in the need for ongoing support at school, work, or independent life.

C. All symptoms must have an onset during the developmental period."

On a more personal note, one of the largest arguments that I have heard regarding usage of the R word is "it is medical term". As of this publication, it is no longer an accepted description or diagnosis and is therefore not acceptable in ANY context.

Thursday, October 25, 2012

According to all the experts, early intervention with Down syndrome is the key, especially in regards to speech and language development. This can seem a bit daunting, however with the aid of an early intervention team, you can create the best environment possible in which your child can learn.

The following information is taken from Buckley and Le Prèvost's article Speech and Language therapy for children with Down syndrome (2002). So far, it is the best one-stop source of information regarding early interventions with speech therapy that I have found. Listed by age group, it outlines the goal centered approach that is often used.

Preschool

Knowledgeable therapists who are up to date with the latest research materials are important to this age group. As kids with DS tend to have issues with hearing, speech and memory issues it is important to focus on auditory discrimination, oral-motor skills, speech and language work. In the first year, home visits should occur at least monthly. if not more frequently. When the child is over a year old, other methods can be employed, including groups sessions. Groups are particularly helpful as children tend to mimic each other.

Goals for the first year

Create an environment that encourages communication, including understanding how speech and language develops and the specific needs of the child

Improve auditory discrimination by targeting speech sounds, including those in the phonological loop and babbling.

Encourage signs and gesturing to augment comprehension

Two Years of Age

Continue to foster an optimum environment for communication

Keep a record of speech sounds as work is continued to support hearing and speech sounds.

Teach word comprehension through play: games, objects, pictures and actions. Keep a record of words spoken/signed

Encourage constructions of two or three words through play and imitation

Address any other issues (due to high incidence of ASD)

Three to five years of Age

Continue to foster an optimum environment for communication

Continue to target hearing/speech production; keep a record of speech sound and progress

Teach vocabulary, grammar and syntax using play and visual aids such as books.

Keep a record of vocabulary and comprehension.

Continue to address any other issues (such as ASD)

Primary School

It is ideal if children receive speech and language therapy in school. Although individual children will vary greatly in skills, all will understand much more than they can produce. As with the younger ages, therapists working with children with Down syndrome between 5 to 11 years of age should be knowledgeable re: current research, development, working memory, etc. For this age group, they should also understand how reading supports the development of vocabulary, grammar, and clarity of speech, as well as the importance of auditory discrimination for speech sounds, phonics and working memory.

Separate comprehension and production goals for vocabulary and grammar

Goals for speech, such as articulation, phonology and intelligibility

Assist teachers: with incorporating speech/language goals into lesson plans and encouraging use of visual aids/reading to assist with language

Assess oral-motor skills, such as feeding, chewing and drinking.

Review goals with parents and teachers

Continue to foster an optimum environment for communication, ensure all (including teachers) understand needs of child, goals set and why.

Continue to address any other issues (such as ASD)

Methods for Goal Implementation

Seen and assessed monthly at school. All involved (teachers, parents, assistants) should have activities to include daily

Activities to be created by speech/language therapist

Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

Secondary School

Therapy should continue with this age group; however age-appropriate modifications should be made to activities. Skill level will vary, however comprehension will still outweigh the ability to express one's self. Continue reinforcing that reading supports the
development of vocabulary, grammar, and clarity of speech, as well as
the importance of auditory discrimination for speech sounds, phonics and
working memory. Social skills, such as conversation may need to be addressed further.

Separate comprehension and production goals for vocabulary and grammar

Goals for speech, such as articulation, phonology and intelligibility

Assist
teachers: with incorporating speech/language goals into lesson plans
and encouraging use of visual aids/reading to assist with language

Assess oral-motor skills, such as feeding, chewing and drinking.

Review goals with parents, teachers and teenager

Continue
to foster an optimum environment for communication, ensure all
(including teachers and teenager) understand needs of child, goals set and why.

Continue to address any other issues (such as ASD)

Methods for Goal Implementation

Seen and assessed monthly at school. All involved (teachers, parents, assistants) should have activities to include daily

Activities to be created by speech/language therapist

Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

Adulthood

Studies have shown that therapy can continue to improve speech and language skills well into adulthood. However, more resources are needed for this age range as they are generally not readily available

Buckley SJ, Le Prèvost P. Speech and language therapy for children with Down syndrome. Down Syndrome News and Update. 2002;2(2);70-76.

Tuesday, October 23, 2012

The training schools for the developmentally delayed in the middle 1800's were an instant success; although they did not offer a cure, they did show improvements in behaviour, physical prowress and social interactions. Many students were able to develop skills that would ensure a successful return to their loved ones.

Sadly, a post-Civil war poor economy did not allow for many employment opportunities for the developmentally disabled in America, no matter how well trained. Jobs were scarce and there were many new immigrants who were willing to work for low wages. People with disabilities were looked at as burdens and were counted (once again) amongst criminals, prostitutes and vagrants in the census reports.

Not surprisingly, there was a simultaneous increase in the demand for training schools; many of the existing schools expanded and initially served a broader disabled community. However, as time went on, the schools quickly became asylums, providing only rudimentary care for their 'inmates'. By 1875, many US states had started construction on institutions for the developmentally disabled. The leaders of these new institutions were now doctors; 1876 saw the establishment of the Association of Medical Officers of the American Institutions for Idiotic and Feeble-Minded Persons (who would later become the American Association for Mental Retardation, now the American Association of Intellectual and Developmental Disabilities or AAIDD). One of the primary purposes of this organization is taken from Article II of their constitution:

"The object of the Association shall be the discussion of all questions relating to the causes,
conditions, and statistics of idiocy, and the management, training, and
education of idiots and feeble-minded persons; it will also lend its
influence to the establishment and fostering of institutions for this
purpose."

How Boys are Taught Simple Manual Labor, Massachusetts School
for the Feeble-Minded, William A. Webster, circa 1903.
Photo courtesy of the Harvard Art Museums/Fogg Museum

The institutions were now medically based,the differently abled now "sick" and in need of treatment (and surely, cure). The superintendents believed that each disability should be grouped accordingly, creating a colony system within the institution itself. Examples of such are an "epileptic colony", a building for "low-grades" or lower functioning individuals and a "girls cottage". The focus had shifted from educating young people to return to the community to housing a large number of individuals of all ages and abilities. To stay financially solvent, these institutions began to train some of the higher functioning inmates
to work in the asylum. They provided cheap (slave) labour as the institutions
became self sufficient, often running their own farms and even power plants. Often located in very rural settings, the inmates were essentially cut
off from the rest of society. Cheap farm land and abandoned farms in depressed rural areas was purchased allowing for the creation of "farm colonies" where higher functioning "patients" provided hard physical labour, without pay, to produce enough food for one of the large institutions. These farms also relieved some of the overcrowding of the main institution. Care was custodial at best, with
the idea that safety and security was all that could be expected.

Both Seguin and Howe, two physicians, educators and advocates for the disabled, foresaw the new direction that the schools were heading to. Instead of presenting the keynote address for a groundbreaking for a new institution in New York, Howe begged them not to open it instead. Regardless, the populations in the institutions continued to rise. There were, on average, 250 people per institution in 1890; that number had doubled by 1905.

Walter E. Fernald, the then president of the American Association on Mental Deficiency, described the institutions as an economic solution to the disabled. In his words,"each hundred dollars invested [in institutions] now saves a thousand [dollars] in the next generation.".Money allocated to the poorhouses and
almshouses by the state was already being redirected to the large institutions as well. By the close of the century, the annual cost of housing a person in such a place ranged from $150 to $250 USD. In a generation, the public view towards the differently abled, especially the developmentally delayed, had gone from one of compassion and eduction to fear and segregation. By 1923 there were over 80 "schools", "farms", "hospitals", "institutes" and "academies" for the disabled. With it's inmates no longer welcome in the outside world, these asylums
could now say that they were relieving society of a great burden.

Protect Us from the Feeble

As the institutions grew and conditions continued to worsen, the public perception of the disabled and "feeble-minded" continued to decline as well. Such "illnesses" were considered to be moral failings of the person or their parents.

Immigration to North America was at an all time high and by 1900, one in seven Americans was born elsewhere. Fear and suspicion of both immigrants and disabled persons was also growing exponentially; this was only augmented by government actions that segregated and excluded these new Americans, which in turn only reinforced and systematized prejudices. The US Public Health Service classified the following together as one group: "criminals, defectives and delinquents". With this in mind, the Public Health Service, administered the new Binel IQ test to immigrants at Ellis Island. Devised originally by the French psychologist (on behest of his government) Alfred Binet, it was created to quickly identify developmentally delayed children for placement in 'special education'. Even Binet himself felt that case studies were more appropriate, however such assessments were lengthy and costly, especially on the larger numbers of people seeking entrance into such facilities. However, there were three codicils to his test: one, the scores are not to be considered permanent. Two, the scale was to be a rough guide for the identification and aid of developmentally delayed children and, three a low score did not determine an innate incapability on the part of the child. However, these tenets were easily brushed aside and from the testing at Ellis Island, it was determined that "79% of the Italians, 80% of the Hungarians, 83% of the Jews, and 87% of the Russians are feeble-minded.", a conclusion which now, scientifically, legitimized the marginalization and prejudice.

As time went on, the view of the institutions shifted further from education to protection; once again the developmentally and physically disabled had become demonized and the public now needed protection.

The Rise of Eugenics

Much like in centuries past, the uncertainty of the economy and world affairs provided a fertile ground for the reappearance of ideas now known as Social Darwinism and Eugenics. The term "Eugenics" was coined in 1883 in Inquiries into Human Faculty and Its Development, a book written by Sir Francis Galton, cousin to Charles Darwin. The Eugenics movement advocated for the improvement of society through the elimination of certain traits.

Misinformation and propaganda began to circulate, citing supposed immorality and the danger to the future of humankind. Feeble mindedness needed to be controlled, if not cured. The term moral imbecility also included such things as juvenile delinquency, behaviour problems and epilepsy and was regarded as a main cause of societal ills including poverty, alcoholism, prostitution, violence and crime in general. Often, those who committed crimes were portrayed in the newspapers in such a way to suggest developmental delay.

Henry Goddard, a psychiatrist at The Vineland Training School, translated the Binet IQ test into English and made a few adjustments; he developed a category of developmental delay known as "moron", which became synonymous with 'moral imbecile' and reinforced the notion that feeble mindedness and therefore delinquency, was hereditary.

John Harvey Kellogg, the inventor of corn flakes, ran a holistic sanatorium in Battle Creek Michigan. In 1906, he created the Race Betterment Foundation, which would hold Eugenics conferences at the sanitarium in the years to come (1914, 1915 and 1928).

The year 1909 saw the publication of The Eugenics Review, the journal of the Eugenics Education Society in Britain. Galton, who was the honorary president, wrote the foreword.

"...This three or four percent of our population is a fearful drag on our civilization. Shall we as an intelligent people, proud of our control of nature in other respects, do nothing but vote more taxes or be satisfied with the great gifts and bequests that philanthropists have made for the support of the delinquent, defective and dependent classes? Shall we not rather take the steps that scientific study dictates as necessary and dry up the springs that feed the torrent of defective and degenerate protoplasm?""...If only one-half of one percent of the 30 million dollars annually spent on hospitals, 20 millions on insane asylums, 20 millions for almshouses, 13 millions on prisons, and 5 millions on the feeble minded, deaf and blind were spent on the study of the bad germ-plasm that makes necessary the annual expenditure of nearly 100 millions in the care of its produce we might hope to learn just how it is being reproduced and the best way to diminish its further spread."

A "sub-committee on Feeble-Mindedness" was also created; it was "under the chairmanship of Dr. A. F. Rogers, Superintendent of the Minnesota School for Feeble Minded and Colony of Epileptics, and with Dr. H. H. Goddard, Director of the Department of Psychological Research at the New Jersey Training School for Feeble-Minded Boys and Girls." Similar committees were created for other "problems", including "Insanity" (Chaired by Dr. Adolf Meyer), eye defects, deafness, crippled limbs, disease, musculature, etc. The 'main committee' was given the task of obtaining records from American families regarding "the inheritance of characteristics of health, ability and temperament". At the time of publication, only 300 of the 5000 family records forms had been returned to be studied, so it was suggested that "data of this sort might be collected by the national Bureau of Census...".

Goddard administered his modified Binet test again, this time to 1.75 million army recruits in 1917 and found that 40% of the white, male population was feeble minded. By 1912, he had written The Kallikak Family: A Study in the Heredity of Feeble-Mindedness, a supposed genealogical account (and moral tale) of a patient in The VinelandTraining School. Named Deborah "Kallikak" (a name made up of the Greek word kallos or beautiful andkakos meaning bad), Goddard maintained that Deborah's great-great-grandfather was a soldier in the Revolutionary war who "dallied with a feeble minded bar maid". Although he was to go on and marry a proper Quaker wife and father healthy upstanding citizens, his earlier indiscretion fathered another line. That resulting lineage, Goddard maintained, not only produced Deborah, whom he described as:

"...a typical illustration of the mentality of a high-grade feeble-minded person, the moron, the delinquent, the kind of girl or woman who fills our reformatories. They are wayward, they get in all sorts of troubles and difficulties, sexually and otherwise, and yet we have been accustomed to account for their defects on the basis of viciousness, environment or ignorance."

The caption reads: "Great-grandson of"Daddy" Kallikak. This boy is an imbecileof the Mongolian type"

...but also a variety of 'degenerate' members of the family, including those felt to be feeble-minded, sexually immoral, alcoholic, insane, syphilitic, criminals, deaf, tuberculous or simply died in infancy. Many case studies of are provided with accompanying photographs, which, even to the most untrained eye of today, appear to be poorly altered to appear more monstrous. However, at the time, this publication did what it was supposed to do; provide 'proof' that feeble mindedness and therefore, all of society's problems, were hereditary.

"There are Kallikak families all about us. They are multiplying at twice the rate of the general population, and not until we recognize this fact, and work on this basis, will we begin to solve [our] social problems."

It also validated the use of segregation in an institutional setting and "...sterilization may be accepted as a makeshift, as a help to solve this problem because the conditions have become so intolerable." Clearly, sterilization was the solution for the time being, until something more permanent could be devised.

By 1915, many of America's prominent universities were offering courses on eugenics: Brown, Harvard, Columbia and Cornell are among those that taught these theories. This is not surprising given the academic backing of eugenics from such persons as psychologists Edward Thorndike and Leta Hollingworth, as well as psychometricians Carl Brigham and Robert Yerkes. Goddard took his presentation on the road and using lantern slides, warned the masses of the "rising tide of feeble mindedness".

A 1917 movie, entitled "The Black Stork" told the fictional story of a couple that were "ill matched" and as a result, gave birth to a disabled baby. The baby in the movie was "mercifully killed" by starvation by eugenicist Harry J Haiselden, who not only starred in the movie as himself, was in real life was a prominent Chicago physician who refused to give life saving care to "defective" babies. Not only were the dying infants displayed to journalists, but he also documented them publicly in the Hearst Newspapers.

Photo from the North Carolina State Board ofCharities and
Public Welfare Biennial Reportof the State Board of Charities and
Public Welfare,December 1, 1920 to June 30, 1922

The American Eugenics Society was formed after the second Intentional Congress and formed committees to better aid in popularizing their theories. These committees included "Co-operation with Clergymen", "Sermon Contests", "Crime Prevention", "Selective Immigration" and "Formal Education". They also sponsored "Fitter Families Contests" and Eugenics information booths at various state fairs. An example of this is a display in Philadelphia in 1926 that featured flashing lights to illustrate the dire consequences of uncontrolled inferior procreation and the phrase "...some Americans are born to be a burden on the rest". The National Education Association's Committee on Racial Well Being also sponsored programs to help college professors include eugenic doctrine in their classes throughout the 1920's.

By 1924, the US Congress passed the Immigration Restriction Act, specifically targeting those from Europe and Eastern Europe, the majority of which had been labeled "feeble minded" a decade before. Those who were differently abled with mild to moderate disabilities were now considered morons and part of the "moral menace". As the institutions were overflowing, the superintendents, many of which have been named here as Eugenicists (and promoted the idea of the degenerate moron), 'paroled' the higher functioning patients after sterilizing them. It did not take long however, for lower functioning individuals to also be sterilized, especially those who displayed habits considered to be obscene. The men were forced to undergo vasectomies and the females underwent tubal ligation.

One contested sterilization case made it to the US Supreme Court in 1927. In Buck v. Bell, Carrie Buck was an young woman that had been declared feeble minded and scheduled for sterilization. A family tree, brought forth during the trial showed that she was the child of a feeble minded woman and that her then infant daughter was the same. The Chief Justice, the iconic Oliver Wendell Holmes Jr., stated that:

“It is better for all the world, if instead of waiting to execute
degenerate offspring for crime or to let them starve for their
imbecility, society can prevent those who are manifestly unfit from
continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.”

Carrie was sterilized and it was found later that she was, in fact, of normal intelligence, as was her daughter who went on to win awards in school. The entire family tree had been fabricated and her entrance into the institution was surmised to be a cover up of her rape at the hands of a foster-cousin, from which her daughter had originated. Carrie went on to be paroled from the institution, got married and eventually died in 1983 in a nursing home. She was buried next to her daughter Vivian, who had been adopted by Carrie's former foster parents (due to her supposed lack of competence) and died at eight years of age. Buck v. Bell has never been overturned.

By 1928, Eugenics was taught in over 376 courses in the US, which covered approximately 20,000 students. High school science textbooks between 1914 and 1948 presented Eugenics as fact, creating two entire generations that believed in segregation, restriction of immigration and sterilization of the "unfit". Compulsory sterilizations of the developmentally and physically disabled were performed worldwide, including in Canada, Sweden, Switzerland, Denmark, Norway, Finland, Estonia, Iceland, Panama and the United Kingdom. The Eugenics movement eventually lost scientific credibility, but not before hundreds of thousands of developmentally and physically people had been sterilized in the name of social purity.

[Next time: Extermination]

Buck v. Bell, 274 U.S. 200 (1927) <caselaw.lp.findlaw.com>

Burr Johnson, Kate. North Carolina State Board of Charities and
Public Welfare Biennial Report of the State Board of Charities and
Public Welfare, December 1, 1920 to June 30, 1922. Raleigh: North Carolina State Board of Charities and Public Welfare, 1922. University of North Carolina at Chapel Hill. The University Library. Web. <http://docsouth.unc.edu/>.

What You Have to Say About Down Wit Dat:

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"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

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"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

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"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

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"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

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